About US

CDKL5 UK and Heartlix.org

Heartlix is a dedicated crowdfunding platform specifically designed for fundraisers to publicise their cause and fund raise direct for CDKL5 UK. This not only cuts out the middle man costs, but also gives your donors a one stop shop to find out more about the condition, read patient stories, and have access to news and blogs which link from the CDKL5 UK website www.curecdkl5.org. By fundraising using our Heartlix platform, you will raise even more money for CDKL5 UK and CDKL5 research and support - and that’s surely what it’s all about.
CDKL5 UK has some great events planned for 2017 and you can be part of it. so be sure to save this website to your browser and favourites. For an ultra-rare disorder, it is important we work together. CDKL5 UK are working with all the other European CDKL5 patient organisations, and also with the LouLou Foundation, whose sole aim is to advance CDKL5 research. So be part of our cause, become a #CDKL5Champion as #togetherwearestronger

CDKL5 UK has some great events planned for the coming year, and you can be part of it. so be sure to save this website to your browser and favourites. For a ultra rare disorder, it is important we work together as CDKL5 UK are - working with the other European CDKL5 patient organisations, and the LouLou Foundation whose sole aim is to advance CDKL5 research. So be part of our cause, become a #CDKL5Champion, as #togetherwearestronger

How it works

Want to help advance CDKL5 research and support families? This is how Heartlix.org works. You decide what your fundraising event is. This can be anything, from a planned event – sporting, cake sale or any kind of sale for that matter, or perhaps donations in lieu of presents for Birthdays, Anniversaries, or Christmas. Visit the “Start a Campaign” menu above and fill in your details. We will then get your fundraising page live within days, and the rest is up to you. Share away, and if using social media, then don’t forget your hashtag and ensure you hashtag CDKL5 UK too.

Our Cause

CDKL5 UK are already funding important research in the UK and will continue to do this. We aim to “home grow” young researchers and try to involve young medical professionals, to ensure this ultra-rare disease is recognised and understood within the medical profession. By doing this we believe more children and adults will achieve a diagnosis, which we hope will help to reduce isolation and to create a bigger community. Sharing our children has already created positive communities, not only in the UK but worldwide. As we say #togetherwearestronger.

How we can help you

Please visit our resource sections from sponsor forms and other resources which can help you with your fundraising. You can also contact us at info@heartlix.org for information on how to purchase running shirts etc.